I was told today that I am a resident of Hope Island. That doesn't necessarily mean that I am hoping for the best, which I am. It also means that sometimes I am delutional or misguided by my expectation that everyone is going to do the right thing.
I keep expecting that people will do the right thing, rise to the occasion, not be petty and selfish, and then I am disappointed. I keep hoping that THIS time will be different and this person will step up to the plate and do what is right and proper and not just what he/she feels is right or fits for his/her own life or circumstances. I am naive in that sense, or maybe I just do not want to accept the truth that some people are just in this for themselves. Selfish. The All About Me Syndrome.
I have a child lying in a hospital bed fighting for his life. This is not about anyone but him. He is the only one entitled to have the All About Me Syndrome right now, and he constantly worries about me. He is always asking me if I have had enough rest, if I have eaten, and if I am okay.
This is the time to put aside petty differences, oneupmanship, jealousy, etc and concentrate on helping him. I wish I could say that everyone could see that, instead, I get unfriended on facebook, nasty emails and texts, rude remarks, snide comments, etc.
As for unfriending me on facebook, should I care? No, I don't. I just find this so petty and unnecessary when we should be pulling together at a time like this. I did nothing to deserve this. The nurses wanted certain people removed from Derek's room entirely and I asked that they not be. I was the one who ensured that they still be allowed to visit. When they said some not nice things to Krystina, I protected her, but I was pleasant to them. This is the thanks that I get. Once again, I am the bad guy.
Am I perfect? No. Not by a long shot. I'm just doing the best I can in a bad situation and not getting any help from the ones who should be giving me the most (except my family). I should be getting nothing but support and encouragement from people who claim to love Derek. I laid aside all of my hurt and pain of the last decade, as God would have wanted me to, and this is what I am given in return.
I am a permanent resident of Hope Island.
Krystina and I can see the the long road that we have ahead. We are working together to give him love, support, care, and everything that he needs. My sister comes down whenever she can to help and relieves me or helps however she can. My kids are here whenever they can. They sit in the hospital for hours, all day, just to offer support.
Krystina left school (she will go back), quit her job, and is down here helping Derek. She caters to his every need. She is by his bedside every day, practically all day, barely taking time to get herself something eat. She is living off whatever savings she might have had because she is not on orders. Because Derek was unconscious at the time, and because they were not married, we could not get her on orders, even though I had POA. So, Kevin, Derek's brother Michael and I am on orders, for now. I have to have two rooms with the size of my family, so cancelling Michael's orders would mean the kids cannot visit their brother without me having to pay for a room, which I cannot afford to do. If this is what I need to do to get Krystina on orders, then I will, because she cannot even get medical care if she gets sick. For now, Krystina's parents and I are not letting her go without. She is staying with me. But we have to get her on orders as soon as possible. It is what is best for her, and I will do whatever I have to do to protect her. It will be rectified soon.
My 14 yr old son spent five weeks in Bethesda. He got up in the morning and sat in the Day Room for about 12 hours each day. Some days he spent less than an hour with Derek because Derek was too sick or sleeping. But Sean just sat there. He didn't care that he couldn't interact with Derek. Even if he was just down the hall, at least he was close. That just goes to show how much love and support even a 14 year old boy can give.
Being there for Derek does not mean physically sitting in his room, since that is not possible given the circumstances right now, and given the fact that Derek doesn't always want or need company. Sometimes he just needs to know that the people who love him are down the hall if he needs them.
Derek spontaneously says, "I love you," and "I miss you" to Krystina, his aunt Kiki, and his siblings. He has always shown that he loves us, but now he is saying it. This morning, when I walked in, the first thing he said to me was,, "I missed you."
Then he asked me to look under his bed. I did, thinking I was looking for monsters like when he was little, and he asked if the Gatorade was there. When I said no, he cursed. He had dreamed that Gatorade was under his bed. He sent me out to buy some. The store was closed until later due to Labor Day, but I got him a Sprite from McDonalds. Even though he still cannot swallow, he happily sipped and suctioned it out! With his permission, we snapped a picture of it, and he is allowing me to share it!
Today Derek had his 21st surgery. He was second case and taken down around 12. The surgery went very well. They washed out his wounds, closed up one wound by his left leg a little more, changed the dressing, and he might be ready for the skin grafts and flap next week.
There is still an infection in the blood, and the abcesses and still in the abdomen, but since the white cell count went down a little more from 25.5 to 21.5 and the fever he had overnight (101), broke in the morning, they held off on the CT scan. The only reason they would do the CT scan was if they were going to go after the abcesses surgically. Because the white cell count is declining, they believe the abcesses are getting smaller. We have to wait it out a few more days.
The ulcer that is the main concern for wound care is down to a stage 3 and is the size of a dime. The nurses have done a wonderful job turning him and caring for the site.
CPAP support went up overnight, but it was reduced after surgery to 5/5. At 4:20 p.m. (1620) they tried the trach collar. Within 15 minutes he was asking for the swallow test - now! Impulsive, impatient! Derek is coming back!
That awful ketamine was stopped last night, so hopefully the nightmares will stop.
Tonight they are giving Derek lunesta. Maybe the little translucsent butterfly from the commercial will alight onto Derek's pillow and bring him happy dreams tonight!
So, I am off to dreamland myself, hopefully, and maybe Hope Island. Sleep has eluded me the last couple of weeks. I doze on and off all night, and then cat nap in that wonderfully, comfortable chair (not!) in Derek's room until someone comes in and wakes me.
Here's to better days, chocolate milkshakes and dancing at the wedding!
God bless you all!